Hello to you all and what a great ide... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Hello to you all and what a great idea this is !!!


Hi, thought I would introduce myself - I was diagnosed with Raynaud's in 1973 when I was 17. By the age of 20 I had cervical sympathectomy both left and right hands which sent heat through my fingers - nice and warm for a while .... I don't know what happened but follow up ceased after a while - maybe my fault - Raynaud's just got worse and had frostbite on the tips of my fingers in my late 20's. Scleroderma was diagnosed in 1992, I went to dermatology for something different and scleroderma was diagnosed with Lichen Sclerosus. Too cut a long story short I retired from work on ill health grounds in 2006. I have Raynaud's, Limited Scleroderma, Lichen Sclerosus/planus, underactive Thyroid, Chronic Fatique, Migraines, Sjorgen's Syndrome. Problems with swallowing and bowel problems and I am on various medication, Iloprost every 6 months and because of a non healing ulcer on my fingers 7 months so far and unbelievable pain, I am taking Viagra for 6 weeks and having botox. The pain is now gone and ulcer is clearing slowly but most of all I am pain free from the ulcer at present.

4 Replies

Great to hear you're getting some relief finally from the drugs. What did they give you for the lichen sclerosus?

I use Dermovate Ointment (not the cream as it has preservatives and can cause irritation) its the strongest they have and stops the itching and keeps the Lichen under control. Have a brilliant consultant and team looking after me.... I had an op last year to remove some Lichen that was not clearing with treatment but it did not turn out to be cancer which was a blessing.

Glad to know your ulcer is not causing pain at the moment, I know it can be unbearable at times. I hope it clears soon.

I have Lichen Sclerosis as well and from what I have been told Dermovate is pretty much the only treatment for it, I too prefer the ointment to the cream, the cream does not seem to work as well in my case. Glad to hear the ulcer is pain free, pains like that are very wearing!

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